ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: emom on December 28, 2010, 02:46:42 pm
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Hello. My surgery was Dec. 7th, translab, and was considered a success. They got all but 1 mm of the tumor. I am home from Chapel Hill, walking. No nausea or vertigo of any kind, balance actually better than before. No facial paralysis of any kind, and facial numbness gone, although a little metallic taste still in mouth, which I read seems to be common.
The surgery took 12 hours and I was up walking to the bathroom by the second day. I was told by my doctors I was a "super star". At any rate, I am certainly blessed.
Today marks 3 weeks since the surgery, and I am physically doing well. Emotionally, well - that is another matter. I am having trouble focusing, having trouble sleeping, can't read, am not interested in anything and am bored out of my mind with vegging. I am also prone to falling into weeps and deep wells of depression. That, too, seems to be common.
I think this must be what post traumatic stress syndrome feels like. I really am grateful - though I don't sound it. Just waiting for emotions and intellect to reconnect, I think???
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Glad to hear that your surgery went so well and that you've have minimal after-effects.
Sorry to hear that your mind is having a difficult time. Have you started getting back into the routine you were following before your surgery? Reconnecting with and doing the simple,ordinary things you were doing before has been of help in shortening the mental recovery time for some folks.
Glad to hear about the parts of your recovery that are going well, hoping the rest catches up soon.
..thanks for being.. migoi
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Hi, emom ~
Congratulations on your successful AN surgery! I'm so pleased to learn that, like me, you enjoyed a complication-free operation and are having a rapid recovery. The post-operative melancholy you're dealing with is not uncommon and should pass once you're able to resume your normal activities. I was thankful for my excellent surgical outcome (and later radiation) and felt generally ebullient once I got passed the first few weeks of inactivity, which, like you, I hated. What I'm suggesting is that this despondency will pass, just give it time and think about the future.
Jim
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Thanks guys. I know that what you are saying is true. I think what is bothering me the most is that I have been an avid bibliophile/reader since the age of 5, and I cannot read. I cannot concentrate on a plot, or information or stuff like that. I don't even want to 'play' with my books. This has shaken me quite a lot, and makes it difficult to get back into my 'routine'. Ditto with knitting. Things that I really cherished are not very important at the moment. And this bothers me.
I am hoping that part of the problem is eye/brain coordination. My eyesight feels very jumpy...only way I know to describe it.
Even reading the forum is a challenge.
I have a primary care appt. on the 3rd to get my stitches out. If things haven't improved, I'll talk to her.
Thanks for the encouragement. I'm just not feeling very "me-ish" at the moment. Reading posts here helps.
emom
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emom -
congratulations on being a postie!
All the things you mention are very common - experienced most of them myself.
Healing and recovery take lots of patience - which I often found hard to come by.
Hang in there; you'll get through this ;D
Keep the faith,
Jan
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Thanks guys. I know that what you are saying is true. I think what is bothering me the most is that I have been an avid bibliophile/reader since the age of 5, and I cannot read. I cannot concentrate on a plot, or information or stuff like that. I don't even want to 'play' with my books. This has shaken me quite a lot, and makes it difficult to get back into my 'routine'. Ditto with knitting. Things that I really cherished are not very important at the moment. And this bothers me.
I am hoping that part of the problem is eye/brain coordination. My eyesight feels very jumpy...only way I know to describe it.
Even reading the forum is a challenge.
I have a primary care appt. on the 3rd to get my stitches out. If things haven't improved, I'll talk to her.
Thanks for the encouragement. I'm just not feeling very "me-ish" at the moment. Reading posts here helps.
emom
If it helps any, I used to love to read. Voraciously. I'd rather read than do most things. I had laser vision correction in 1994 and since then my vision, while 20/15 -20/20 is good for life, I can't read a book for the life of me. The letters on the page blur together and I see pages and pages of black lines. It was so disheartening. Still is. Since my surgery my left eye (tumor side) is slightly blurry and has a spot right in my line of sight. This makes driving at night challenge. I have an appt with my laser surgeons office in early January. It could well be a combination of both the fatigue from the surgery (which is an acquired brain injury) and the effect of the tumour on the visual nerves. I think you are right to talk to your doctor and have them perhaps set you up with an eye appt. Remember though, that there are many side effects from brain injury...fatigue and lack of ability to concentrate among them. Hang in there kid!
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emom .....
What you are feeling is so very normal ..... but it will get better!
I had much difficulty with gaze stabilization and could not read a small-print book for months after my surgery. I am also a pianist and could not follow a music score for a very long time. Thus, like you, I was very depressed that my two major enjoyments in life were severely limited. Ever so gradually my eyes began to hold a focus and now I can even read while walking on a treadmill (and do I ever need to get back on it after Christmas!).
Thoughts and prayers.
Clarice
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Wow, you're doing fantastic if your surgery was the 7th!! As for reading books - it took some months before I could focus enough to care for reading - and I LOVE reading. Perhaps you could just listen to books until you are able to focus? All the best.
cecile
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Thank you all! Just hearing that others have had this reaction is very, very heartening, and that it gets better. It lightens the depression a bit.
And yes, patience is a totally unatural state, unless I am doing something i want to do. Guess God has decided that i need to learn the real meaning of the word, lol.
God bless, and again, thank you for the encouragement. Today is already a better day than yesterday.
emom
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Glad to hear your recovery is going well! Your emotions are completely normal, not only your body has had a traumatic experience, but also your mind. I remember not even being able to stay on the phone that long with well wishers', and reading? Forget about it, didnt' want to do much of that either, but those feelings' passed, now I cant' talk enough ha ha. Wishing you continued recovery.
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Emom,
Glad things went well for you. You are a Super Star. I also love to read and had issues after surgery (goofy eyes, no memory). I could read maybe a paragraph & it actually meant nothing. I just came to the realization this week that my reading IS back!!! I am reading a couple of books a week now. It just sort of slowley crept up on me!! Love It! As far as the emotions go that appears to be oh so normal. It is cloudy at times but there is a rainbow somewhere. I actually improved my well being through drugs! A little Celexa goes a long way. Today I still cry at times but I laugh more!!!!!
Take care and listen to you body, you really need tons of R & R.
Happy New Year,
Lynn
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The responses I have gotten on this thread have made such a huge difference in my attitude. I think I was afraid I had lost my main source of pleasure in life (reading) for good; that is what it felt like, and was a big part of my depression. Just hearing your stories has already made a difference.
And I have found that, if I am careful, I can read a short chapter. All of this is hugely encouraging for me and effects my emotional well being pretty strongly.
I mentioned on a post that yesterday I had had a really, REALLY heavy duty (by my 'new normal' standards) day - did a lot, visited a lot, etc. Today, I am having to take the R&R advice seriously, as my body is saying NO to much of anything but vertical rest, lol. Reading your posts helps me go with the flow. A totally unatural state for me, I might add, as I am a do 3 things at once multi-tasker personality.
Thanks for the good thoughts and the prayers. I am going back to bed for a while!!
love, emom
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Have no fear, emom. You will be a reader again.
I'm one and so are lots of our fellow Forumites.
We even have a topic going under the AN Community section. Look for the ANA Book Club thread.
Best,
Jan
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This forum is great for help in recovery from "this". As far as reading I was an avid reader until I started on the path of falling asleep shortly, and I mean 5-6 mins shortly after starting a book. Eye strain I guess. So I have been listening to books. Still fall asleep though.
From one book lover to another keep on healing!
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Thanks Jan...GramaSuby and everyone.
I am happy to announce that I AM READING!! I'm not up to my hours and hours of it yet, but I made it through a book, then another....and I'm not having concentration problems as badly. It's one month since surgery (and a few days), so my concentration seems to be coming back.
Also the wonky head is better, although I have a strange thing going on where my head seems heavier than any part of my body, and I kind of walk 'leaning forward'. I don't know how else to describe it, but it's very odd.
Pain is better and tiredness level is getting better. I can actually do a small days work (and I'm talking only about housekeeping here - clothes, a little cooking, etc.). I am so happy. I still have trouble with too much stimulation. Today is the Feast of the Epiphany, so I went to the noon mass at my Anglican church. There were only about 20 people there, and it was just perfect. Not too many, and I managed to comingle for an hour and a half (including communion) before I started that awful feeling of being a ragdoll with a hole in her toe where the sawdust was leaking.
Altogether, I am most grateful that things are looking up, and grateful for all the comments and help of the AN board.
emom
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Emom .....
before I started that awful feeling of being a ragdoll with a hole in her toe where the sawdust was leaking.
Love your example! How true it is and only those of us on here can truly understand it!
As for the leaning forward feeling ..... this is the brain adjusting to the new vestibular signals (or lack thereof). I still feel this way when I am in a dimly lighted environment or extremely tired ..... although I feel like I am leaning to the left. It is very normal and will lessen as your brain adjusts.
So happy for you being back to reading!! Yaaaaaay.
Continued thoughts and prayers.
Clarice
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Thank you most kindly! Good health to all.
emom
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great to hear your recovery is coming along good...some times the steroids they give you after take you for a ride on the emtional rollercoaster.
patience and time....that heavy head is normal...bobble head or fishbowl head or bowling ball head.
grogery shopping killed me at first now i do not dread it so much...i would try to hurry through weeble dow the isles and avoid people at all cost out of fear of running into them becouse my perceptin was so off.
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So far I have been VERY lucky. I don't really have any perception problems (other than"leading with my head" forward when I walk), and my eyesight is pretty stable. A little trouble focusing after I move my head.
The remaining major problem is just the amazing tiredness. I am pretty much good for almost 2 hours, then bed rest. Sigh.
I know - I know - PATIENCE. God and I are discussing that, as of this moment, lol.
Thanks, friends.
emom
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I had my surgery a week before you (Nov. 30) and you could be my twin. Reader, knitter, etc., all of it. Same stuff going on. Never ever in my life depressed, but I was, in spades, the first 3 weeks post surgery. I still don't know why because like you, I had a reasonably good outcome and having gone through my son's Grade IV brain cancer journey in 2009 with no depression, this was totally unexpected. Thank God the awful headaches I had for 2 weeks are gone or I would still be depressed!
But tonight I'm sitting in a hotel in Rolla, MO on our way to Oklahoma City for a quilt show (we vend). So I'm back to work and functioning fairly well...even driving through the snow storm (which in this part of the country, they do NOT know how to handle). Of course, I had to see the eye doc this morning because it turns out I have a scratched cornea (from the continual eye dryness, post surgery), but with my green eyes, the red infected part makes my eye look very Christmasy (albeit 2 weeks too late)! So now I can laugh about these little setbacks. You will too. I'm even used to the really loud tinnitus now--like an old friend--the new normal.
So, 6 weeks post-surgery, you'll be better and happier. Get a Kindle--you can change the font. I recommend the Hunger Games trilogy by Suzanne Collins. Kind of science fiction in the Lord of the Flies vein...very mind distracting...just the thing to take your mind off "you." Be well...life goes on.
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Glad both of you "Twins" are recovering well now. Since you are both avid readers, it occurred to me you might want to check out the Book Club thread on this forum: http://www.anausa.org/smf/index.php?topic=5989.0
Last summer several of us read the whole Hunger Games trilogy ..... you might enjoy exploring the discussion.
Also, we are always looking for good reading ideas so join in the fun!
Clarice
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Cakulmom, I think you are right. It is officially 5 weeks today, and I do feel better and stronger every day. It is SERIOUSLY irritating to feel good enough to go one day and needing bed rest the next, but........I guess I'm just going to get used to it.
I'm primarily a British cozy mystery fan. I just finished three Poirot's of Agatha Christie. When I am feeling somewhat under, I find great comfot in the wonderful old "Golden Age" detective fiction. I do like science fiction, but mostly either the fantasy kind or the good old Heinlein or Asimov variety.
Right now I am just enjoying to the hilt the fact that I CAN READ!!!!!!! Oh joy. :)
emom